But you don’t look sick.
The good thing about lupus is frequently you do not look sick. The bad thing about lupus is because you do not look sick, you do not always get the understanding, compassion, and support that you sometimes need.
Maybe you have had the same comment made the “but you don’t look sick” comment to you. People seem to think that lupus sounds like a very complicated diagnosis, and you ought to be pretty ill if you have that disease. But if you have lupus you know that the illness can vary quite a bit from major problems such as kidney, cardiovascular, central nervous system, and other internal organ manifestations to complete remission with no symptoms.
Frequently people will have mild lupus with some achiness, fatigue, a tendency to have rashes, but nothing life-threatening. Then their family members and coworkers will tell them, “You don’t look sick.” That, of course, does not describe your energy level or how you actually feel. A lot of things are not evident from appearance. Things like kidney disease, the kind of achy joint problems that you may get as part of lupus, Raynaud's phenomenon where your fingertips turn blue or white, and other symptoms.
What to tell people? Sometimes it is better not to get onto the health topic because it is both personal and difficult to describe. But if you really want to go in that direction, you could try attempting to quantify your symptoms. How much fatigue (0 to 10) do you have? How much pain (0 to 10) do you have? Because pain and fatigue are subjective symptoms, only you can describe their intensity. I often see patients who have fibromyalgia sometimes with and sometimes without lupus, and this is another diagnosis, which needs to be differentiated from SLE and it is treated differently.
Know that if you’ve heard “but you don’t look sick,” you are not alone. Many people with different diagnosis have heard it as well. In fact, there is a website called www.butyoudontlooksick.com, that describes the way lupus patients often feel.
The good thing about lupus is frequently you do not look sick. The bad thing about lupus is because you do not look sick, you do not always get the understanding, compassion, and support that you sometimes need.
Maybe you have had the same comment made the “but you don’t look sick” comment to you. People seem to think that lupus sounds like a very complicated diagnosis, and you ought to be pretty ill if you have that disease. But if you have lupus you know that the illness can vary quite a bit from major problems such as kidney, cardiovascular, central nervous system, and other internal organ manifestations to complete remission with no symptoms.
Frequently people will have mild lupus with some achiness, fatigue, a tendency to have rashes, but nothing life-threatening. Then their family members and coworkers will tell them, “You don’t look sick.” That, of course, does not describe your energy level or how you actually feel. A lot of things are not evident from appearance. Things like kidney disease, the kind of achy joint problems that you may get as part of lupus, Raynaud's phenomenon where your fingertips turn blue or white, and other symptoms.
What to tell people? Sometimes it is better not to get onto the health topic because it is both personal and difficult to describe. But if you really want to go in that direction, you could try attempting to quantify your symptoms. How much fatigue (0 to 10) do you have? How much pain (0 to 10) do you have? Because pain and fatigue are subjective symptoms, only you can describe their intensity. I often see patients who have fibromyalgia sometimes with and sometimes without lupus, and this is another diagnosis, which needs to be differentiated from SLE and it is treated differently.
Know that if you’ve heard “but you don’t look sick,” you are not alone. Many people with different diagnosis have heard it as well. In fact, there is a website called www.butyoudontlooksick.com, that describes the way lupus patients often feel.
